Meeting patients’ needs with patient information systems: potential benefits of qualitative research methods

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Abstract

This article reports on our pilot evaluation of an electronic patient information system for children with amblyopia and their parents. The aim was to investigate whether the information system would be able to improve the quality of care, as indicated by an improvement in the effectiveness and efficiency of care, and in an increase in patient satisfaction. In the pilot evaluation, we used qualitative research methods, exploring the impact of the information system on children and their parents, with the aim to find suitable indicators for a potential further, quantitative study. Yet we found that the system was little used and had marginal effects on the quality of care for children with amblyopia and their parents. It appeared that the main problem underlying this patient information system was that the needs of those people who actually would be using the system had never really been investigated. The designers had built their assumptions about these needs into the system. These appeared to be mistaken at so many levels that the system could not become a success. As a result of this pilot evaluation, the patient information project was thoroughly transformed. This study makes clear that a thorough exploration of user needs before building the system, using qualitative research methods, may be crucial because it can prevent mismatches and maximizes the chance that the eventual information system meets its most important aim: to enhance patient empowerment and improve the quality of care.

Introduction

Adequate patient information is important for the quality of care: it is one of the key indicators of patient satisfaction and it improves the effectiveness and efficiency of care giving [1]. The traditional means of disseminating patient information is the face-to-face explanation of the caregiver to the patient during the consultation. More extensive, background information can be given through paper-based flyers and, more recently, videos. The problem with these media, however, is that they address the ‘average’ patient, and deliver a uni-directional flow of information in a pre-fixed sequence. Electronic patient information systems, on the other hand, can use more interactive ways of informing patients, and may thus be better geared towards the needs and capacities of individual patients. In addition, electronic patient information systems can establish virtual meeting groups for patients, discussion lists, or occasions for (public or private) electronic interchanges between patients and experts. Through these means, such systems may enhance social support systems, may support patient decision making and planning [2], enhance the patient's trust in the caregiver and increase compliance [3].

Patient information systems are increasingly popular, but there are not many documented success stories about patient information systems (see for a concise review [4]). A core issue for such systems is their ‘usability’, which includes the extent to which the system takes the actual user's needs and capacities into account (ibid.). This issue might seem obvious, but failing to meet users’ needs has been a recurrent failure factor in the wider field of information system development [5], [6], [7], and is often caused by paying too little attention to these needs in the early, design phase of the system [8], [9], [10], [11]. For the success of patient information systems, the necessity to address the projected users’ needs is especially vital.

This article reports on our pilot evaluation of an electronic patient information system for children with amblyopia and their parents. Building upon the work of Forsythe and others, we will argue that qualitative research methods, as we used in our evaluation, can be of help in meeting patients’ needs with patient information systems.

Section snippets

Background

In amblyopia, normal vision in one eye fails to develop because of a difference in vision between the two eyes in early life. Amblyopia can only develop in very young children and the treatment has to start as early as possible, but in any case before the child has reached the age of 6 years. Treatment usually involves patching the unaffected eye to stimulate the use of the amblyopic eye. To improve the quality of care for children with amblyopia and their parents the Rotterdam Eye Hospital has

Research approach

To find out whether this electronic information system for patient information giving would improve the quality of care, the Eye Hospital wanted a scientific evaluation of the system. Their initial idea was that a controlled study would have to be done to proof the increased effectiveness, efficiency and patient satisfaction that this system would bring. Some 200 patients would constitute a control group, who would receive the common information that is given to patients with amblyopia (like

Effectiveness

The actual use of the system by the patients was disappointing. Most families only checked the CD-ROM once or twice. Afterwards, they never used the CD-ROM again. From the Internet site, only the Chatbox part was really used, but just by half of the 14 respondents. The only reason to use the Chatbox was to ask questions to the orthoptist or the ophthalmologist. No chatting between users evolved. As a result, a support network did not emerge or grow through use of the system.

Almost all of the

Discussion and conclusion

I think that the designers have been thinking too much from their own point of view. With the best intentions. But the people who worked on it haven't really put themselves in the position of the people who get the information, the parents. That's what I think I'm seeing in this system (respondent J).

I still know what I first thought when I heard about the system: ‘it's nice that they made this, but is all this necessary for amblyopia?’ (respondent J)

This interactive electronic information

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